Study: Patient views on ‘ladders of engagement’

I was commissioned by the Patient Partner Working Group of the Ontario SPOR Support Unit (OSSU) to write a paper exploring patient views on ladders of engagement in the context of patient engagement in research. I’m excited to share the final results: an in-depth, interview-based study including views of patients who are actively engaged in research – not as subjects, but as collaborators or patient partners – on topics such as meaningfulness, professionalization of patients, and the extent to which engaged patients feel represented by others. See the abstract below for a description of methods and findings.

The Ontario SPOR Support Unit’s Patient Partnership Working Group (PPWG) has commissioned a patient-led study to investigate patient views on “ladders of engagement” frameworks, using IAP2’s Public Participation Spectrum (IAP2 Spectrum) as an example. Objectives of the study include determining what relevance such frameworks hold for patients and discovering if there is opportunity to reimagine a framework from a patient perspective. To gain insights into these questions, eight (8) patients were interviewed, the findings of which are discussed in this paper.

Conversations with engaged patients revealed diverse motives, preferences, and intentions related to engaging in research. The participants had differing understandings of key concepts such as partnership, meaningfulness, and what constitutes ‘good’ engagement. As a result, the interviewed patients did not relate easily to the IAP2 Spectrum. They felt it did not accurately reflect their experiences, and some thought it was not a desirable or helpful model from their perspective. Some patients were in agreement, however, that the IAP2 Spectrum may be useful in familiarizing newly engaged patients with researchers’ views on engagement.

As a way to more easily talk about and analyze patient views, the participants were identified as belonging to one of three groups: patients who volunteer to provide their perspectives and feedback; patients with pre-existing professional-level research experience who volunteer their skills; and patients who seek to shape the practice of patient engagement by providing consulting to researchers and health institutions and organizations. Sorting the participants in this way was instructive as it helped to illuminate some of the tensions within the engaged patient community, particularly as they relate to the increasing “professionalization” of patients. In particular, participants were divided on whether meaningful contribution to engagement activities requires full partnership with researchers. In addition, there was concern among some participants that research-related training for patients may affect patients’ abilities to maintain their unique patient perspectives, considering the intensive socialization into research practice that training provides. Another notable finding was that some participants felt that patients who advise on the practice of patient engagement do not necessarily represent the views and preferences of all engaged patients.

While there are no easy solutions to resolving these tensions, this study helps to shed light on patient views on engagement in research and offers ideas for further investigation.